Crohn's Disease Forum » Your Story » My Life-Long Stuggle...


04-15-2011, 12:33 PM   #1
ifeelsick
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My Life-Long Stuggle...

Geez...where do I start? I suppose I should preface this by letting you know this is going to be a very long read. I hope some of you will read it in its entirety, and offer me any advice and information you may have. I'm really at my wits end with all this. Any and all feedback will be greatly appreciated.

I am a 28-year-old male who has been suffering from digestive problems(mainly chronic painful diarrhea)literally my entire life. I have no memory of it, but apparently I even defecated in the womb during labor. As a baby my diapers had to be constantly changed due to my chronic diarrhea. It was bad enough to warrant a trip to my pediatrician, who subsequently blew it off as nothing. This continued on through infancy. Remarkably, I am told I was easy to potty train. As I stated previously, being that I was so young, I have no memory of any of this. This information comes directly from my parents, who have no reason to lie about it. But even a good majority of my earliest memories include me having diarrhea, abdominal pain and/or just feeling generally ill.

I should also mention that my dad was in the military, so we had to move around a lot. This meant changing schools as well. I changed schools 7 times before high school. It's not easy being the new kid, and this stress did not help my problem. Thankfully, I attended all 4 years of high school at the same school. But that didn't make the problem any better either. Throughout my school years I was always having to ask for permission to go to the bathroom. And as I'm sure most of you know, it's not possible to just go real quick and be done. I need a minimum of 15 minutes, and that's on a good day. And when you're gone for that long the teacher and other students tend to notice. Then, most times, I have to go again soon after. The whole thing can get to be very embarrassing to a person of any age, let alone a child at school. It got to the point where I would just call one of my parents to come pick me up, or just stay home from school altogether. Needless to say I was never one of those kids who got an award for perfect attendance. I missed a lot of days and classes. Luckily I'm a fairly intelligent individual(not trying to float my own boat or anything) and school came fairly easy to me. I always made up all the work I missed, and did well on tests. My parents had to fight with school administrators and teachers over the years due to my absences, but my grades were good, so they(the administration) couldn't really complain. I am lucky to have very supportive parents.

The problem started getting bad around the time I was 11 years old, and got increasingly worse through junior high. I had seen doctors who, naturally, were perplexed. But instead of doing the proper tests, they just prescribed me medication that didn't work. One even gave me a prescription for zantac. Zantac is for heartburn, not diarrhea. *sigh* In 8th grade I even missed my chance to play for my junior high basketball team because of my diarrhea. Tryouts lasted 3 days. The first 2 days I did great, and had pretty much locked up my spot in the starting rotation. I have always loved basketball, but didn't have a natural talent for it. So I had been practicing hard for a long time, and was quite proud of the improvement I had made. I was finally good enough to play for an organized team! The third day of tryouts I ended up having to go home at lunchtime because of terrible abdominal cramps and diarrhea. I was determined to come back for tryouts after school, and I did. When I get there the coach tells me that I am not allowed to participate in the tryout because I left school before lunch was over...district policy. He said I could stay and watch, and that would count for something. But since he picked who makes the team based on a points system, I didn't get enough points to make the team. Had I merely participated, I would have made it. As a consolation I was offered the team manager position. I declined.

I was not referred to a specialist until high school. By this time I was going through immodium like it was going out of style. It only helped a little, but a little is better than nothing. The gastroenterologist(GI from here on out) did a sidmoidoscopy and an abdominal x-ray with barium enema contrast. He found nothing and diagnosed me with irritable bowel. I was directed to keep taking the immodium; nothing was prescribed. I miserably made it through high school and into college relying on immodium. In college I started to miss classes because of my diarrhea. I would show up to school, and try to attend as many classes as I could, but would end up spending most of the day in campus bathrooms. Somehow I managed to keep my gpa up for two years, though not as high as my high school gpa. Then, for reasons not related to my digestive problems, I decided to transfer to a different college.

When I first moved, that's when I had my first bout of bloody diarrhea. DARK red; almost black. It scared the living daylights out of me. I saw a doctor, who did no tests, but assumed it was IBS. I was told dark bloody diarrhea is normal in IBS(we all know that is NOT true). He gave me bentyl, which didn't work at all. Now, because my financial aid got screwed up, I ended up not being able to attend school right away. So, instead, I had to work. I was lucky enough to find a job that made it easy for me to use the bathroom any time I wanted, for as long as I wanted. I did so well at my job that I was eventually promoted. The subsequent position required me to work very long hours, 6 or 7 days a week. I did have a hidden private bathroom near my office that seemingly no one else knew about...heaven!!! Unfortunately, the long hours/weeks started to take a toll on my body as a whole, so I decided to go back to college.

I won't go into much detail on my return to college, but I will say it was an absolute failure. Like before, I would end up missing classes regularly being stuck on the toilet. I did see a doctor there too, who put me on another anti-spasmotic that also did not work. My grades then tumbled(engineering and physics classes are really hard even when you can go to class every day. I simply couldn't...even if I tried), and I decided it would be best to leave school and not waste $17,000/year on something my body would not allow me to do. I had to move back in with my parents, and spent the next year dealing with a severe kidney infection. It was my second severe kidney infection in 3 years. I still have kidney/urinary problems, including stones(ain't life grand?). After the infection cleared up I was able to get back out on my own.

The following couple of years were no less troublesome. Working became increasingly more difficult. I would have to leave for work hours early, and use a public restroom near my workplace to make sure I wouldn't have to run to the bathroom as soon as I clocked in, or even worse, be late. And, like many of you, I would always(and still do) have to bring a spare pair of underwear and wet wipes wherever I went...especially when at work. During this time the blood in my stool became much more frequent. After the economy plunged I was laid off, and could not find another job. I was forced to move back in with my parents once again.

This turned out to be a blessing in disguise because my digestive problems started to get significantly worse. And being that I had no health insurance(and still don't), I had to rely on my parents and charity from hospitals to pay for my doctors visits and such. At first I thought the severe increase in pain was due to a kidney stone. I did have a few moderately sized ones that took a couple months to pass. Once they finally passed, I expected the pain to return to where it was before. It didn't. My dad finally got fed up and took me to his doctor and made it perfectly clear that something had to be done. He saw my symptoms as a red flag for Crohn's(severe chronic diarrhea with and without blood, abdominal pain/cramping, sores in my mouth, rashes, weight loss, appetite loss, rectal bleeding/discomfort/pain, joint pain all over my body)...something that had never even been mentioned to me by any other doctor, including the GI specialist I had seen previously. To be honest, I really had no idea what Crohn's was or what the symptoms were. I had heard of it, but was given no indication that my symptoms were indicative of this disease. In the meantime I was put on another anti-spasmotic that didn't work. He tried to get me on Lotronex(sp?), but without insurance they wanted $1,200 for 60 pills. RIDICULOUS!!!!

I was referred to a GI who, for the first time, told me a full battery of tests were needed ASAP. He also put me on Lomotil(diphenoxalate w/ atropine). At first the Lomotil worked slightly, but nowhere near enough. I still take it, even though it doesn't work any better than immodium(they're quite similar, I've found out). I'm still constantly running to the bathroom, and I am sometimes awoken from what little sleep I get with diarrhea. The abdominal pain is constant and moderate to severe. As far as diagnostics are concerned, we started with a colonoscopy...nothing showed up. Then the upper endoscopy...same result. Then a small bowel follow-though with barium contrast...inconclusive. The only thing that did show up was high inflammation markers in my blood tests. But since no visible inflammation showed up in any previous tests, he didn't seem too concerned with this. I was also told that the blood in my stool was from my hemorrhoids. I know I have hemorrhoids that bleed frequently. But I also know the difference between a bleeding hemorrhoid and bloody diarrhea. The only remaining course of action was the miracle that is the capsule endoscopy. That's where I'm at know. I actually went in this morning and swallowed the little camera, and got hooked up to the transmitter. It is working its way through my system as I type this, taking pictures of my small bowel. So I guess all I can do now is wait for the results from that. I know this may sound weird, but I'm praying I have Crohn's. Just knowing what is wrong with me would give me so much peace of mind. And then, perhaps, I could get on a treatment that actually works. In turn, I would be able to get my life back.

I just want my life back. I have no social life, I can't work, I can't support myself, and have to prepare if I leave the house. I have to know where all the public restrooms are located wherever I'm at, as I will likely need to use them. My condition has alienated me from my friends, as they all have their own lives, spouses, children, etc. They don't have the time to work a sick friend into their schedules. Not that I feel well enough to be social anyway. I don't even like talking on the phone since I feel all I have to talk about are my health issues. And only people who suffer as we do can understand what it's like. They just can't empathize, but it's no one's fault. Aside from that, I'm seriously starting to worry about how much longer I can survive like this. I am almost 29 years old, nearly 6 feet tall and weigh less than 130 pounds. My normal, healthy weight is between 145-155. I lost most of that weight in a very short period of time. And I cannot put it back on due to the fact that I'm practically terrified to eat anything, and no longer have the energy to exercise like I used to. I've meticulously tracked my eating habits in order to try and find out what foods may be causing this. It doesn't really matter what I eat. There are certain foods that make it a lot worse, but pretty much everything goes right through me, and the pain never goes away. I was told adding fiber to my diet would help if I had IBS, but fiber makes it SO MUCH WORSE. Like most of us who suffer from digestive problems I also have severe anxiety, and have since I was about 11. I was finally put on xanax when I was 23, and that helps tremendously(my anxiety, not my diarrhea). But being that I'm uninsured, I don't have the ability to get my prescription filled/renewed on a regular basis.

Basically, my life is a living hell. I try to stay positive, and live day-by-day, but it's very difficult. I'm pushing 30 and I have no quality of life whatsoever. I'm tired of the doctors telling me it's IBS, all in my head, or that I don't deal with stress well. Those are cop-outs, excuses. The IBS meds simply don't work...period. It took me decades to actually get the proper tests done. When I had insurance the doctors showed no desire to thoroughly test me to find the root of the problem. Now I'm up to my eyeballs in medical debt, and cannot even make my student loan payments. I'm hoping this pill cam will give the answers I've been seeking. Until then, I just gotta keep on keepin' on. If nothing shows up, I guess I'm back to square one, and will try and seek another opinion from a different doctor.

Well, that's about it. Believe it or not, that's the abbreviated version of my problem(s). If I went into full detail it would be a novel. If you've actually read all this, I cannot tell you how much I appreciate it. I would love to have some input from others who have dealt with what I'm dealing with. Even input about my symptoms from those who were diagnosed relatively quickly would be greatly appreciated. I need support from people who understand, and know what it's like to feel this way. To this point, I feel like no one truly grasps the severity of my situation, and how horrible I feel on a daily basis.

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04-15-2011, 12:58 PM   #2
tiloah
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I'm sorry to hear you have been dealing with all of this for so long. I hope they are able to find some concrete evidence of something causing this so you can get some treatment. My thoughts are with you.
04-15-2011, 01:45 PM   #3
Cat-a-Tonic
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Hi and welcome to the forum. I'm undiagnosed myself, although I haven't been ill for nearly as long as you have - I've only been ill for the past year and a half. I know the frustration of going through many tests and being told the results are normal, and I have also been told by a couple of doctors (not my regular doctors, fortunately) that I have IBS/depression/I'm just plain crazy. I also know the frustration of the medical bills piling up, and I would like to say that you should check with the hospital or doctor that did the tests to see if they offer any kind of financial aid or assistance program for your bills. I applied for one of those programs even though I didn't meet the criteria, and I was accepted anyway and my bills through the end of 2010 went away! So hopefully that helps you, there is light at the end of the tunnel both diagnostically and financially.

We've got a thread in the support forum called the Undiagnosed Club, where those of us still waiting for answers have congregated to support each other. You're more than welcome to join us. I really hope the pill cam provides some answers for you! It sounds like you've been waiting way too long for a diagnosis and some relief. I wish there was more I could say, your story is just so heartbreaking. Please stick around the forum, the people here are so amazing, kind, and supportive. I wish you luck with the pill cam, please update us when you get the results!
04-15-2011, 02:49 PM   #4
ifeelsick
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Thank you so much for the replies! I really do find solace in knowing I'm not alone in all this.

Cat-a-tonic: It doesn't matter if you've been suffering for a year or one hundred years...it's still miserable! So we're in the same boat regardless of how long we've each been dealing with this. Your Undiagnosed Club was actually the reason I signed up to begin with. Once I saw it, I knew I had found a place where people would understand. So you'll probably be seeing me in there a lot. And I am on an uncompensated care plan with one of my local hospitals. It covers any procedures or diagnostics I need to have. I didn't pay one red cent for the colonoscopy, blood tests, upper scope or small bowel follow through. I did, however, have to pay a $450 deposit for my pill cam, and still have a $400 balance just on that. Anything done in my gastro's office, I have to pay out of pocket...even though his office is at the hospital. I also still have to pay for office visits. I am currently working on getting discounts for these, but it'll only be 20%. But 20% is better than nothing. I'm still working on getting all my previous bills absolved. I'd be more than happy to pay if I could(no amount of money is worth my life), but I simply can't. I want nothing more than to be able to go back to work, get insurance, and have a normal(as possible) life.

Well I gotta go get ready to get this heavy pack taken off my skinny butt. I'll definitely keep you up to date on the results in the Undiagnosed Club thread.

Thanks again!!!
04-15-2011, 04:26 PM   #5
Cat-a-Tonic
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I'm glad you've got a way to get your scopes & tests done for free, that's excellent. As far as getting your xanax refilled, you might want to check with your pharmacy and/or the company that makes xanax, as they may be able to offer a discount or some sort of savings program. And if that doesn't work, check with your doctor the next time you have an appointment - often times, doctors will have a fair amount of free samples of meds from the drug reps that they can give you for free (there was a thread a little while back on how to get your meds if you can't afford them, and as I recall those were the best suggestions given).

I hope you get your pill cam results fairly quickly. If I recall correctly, when I had mine done I was told that it can take up to a month for the results, and I believe it took close to that (maybe 3 weeks or so) for me to get my results back. In a way that's good, there's SO much data that gets recorded from the pill cam and the doctor has to look carefully at each image, which is why it takes forever. But at least that means that every inch of bowel is being scrutinized. It was agonizing for me to wait so long for results and then to be told that my pill cam results came back normal... I was really depressed about that! I really hope you get some positive results and a diagnosis from yours. Nobody deserves to be suffering like this, and especially not for as long as you have been.

We look forward to seeing you in the Undiagnosed Club and elsewhere on the forum!
04-15-2011, 08:24 PM   #6
Jennjenn
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Hi welcome

I feel bad that you are going through all of this.
When I read the part about working and having to go it reminded me when I started to get really ill again but I worked in a lab. To leave the department to go to the bathroom took forever because of the protocol we had to follow. Secure samples around you, make sure monitors were ok to leave the area, take off lab coat and eye shields, remove gloves, rush to sink, wash hands, use purell (was required), then leave the department, hold up badge to go into other area to get through the door to reach the bathroom. All throughout praying I made it on time.

I got too sick and could not work anymore.

I hope that they can find you some relief soon so that you can feel well.
04-16-2011, 02:03 PM   #7
xJillx
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Welcome! I am so sorry you have been suffering so long and haven't gotten a diagnosis yet. It is very frustrated. Trust me; I know.

I sure hope your docs can get to the bottom of all this and get you feeling better.
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
04-16-2011, 03:45 PM   #8
ameslouise
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HI there and welcome! Can we get your real name so we know what to call you?!?!?

Sorry you have been suffering for so long. And while it's great that you have financial assistance from the hospital, it doesn't cover everything as you mentioned and that's a shame because I am sure you are hesitant to get stuff done due to cost. I hate that about our country.

I hope you can find some relief soon thru a firm dx and medicines. Can you at least get on pred for the time being to make you feel better? It's CHEAP and works fast, but is not a long term solution. I guess first you'd need a firm dx before a doc would prescribe that.

Good luck - keep us posted on your progress!! -Amy

PS You are right - dark red blood is NOT IBS! How come WE all know that?!?!?
04-16-2011, 04:27 PM   #9
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I am so sorry you have been going through all this for so long.
I hope you get a firm diagnosis soon and please keep us posted.

Welcoming Hugs~Nancy
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04-16-2011, 04:33 PM   #10
RFarmer
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Welcome to the forums!

I'm very sorry you've been struggling for so long. That sounds like one heck of a life.

It's nice to know you haven't given up though. Hang in there, you'll figure it out.

I mean, I'm sure you've heard that all your life, but really...

Have a flower, it might make you feel better

04-17-2011, 12:49 PM   #11
vickyhunter
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You poor thing. Like you said, try to keep positive, it's the best you can do in this situation!
I was diagnosed quite quickly and you've asked for some symptoms. Mine were (the main ones).... vomiting, weight loss, blood, diarrhoea, anaemia. and on the tests I had done, the results of my endoscopy showed I had lesions, bleeding and inflammation in my ilium and small intestine. A barium feed also confirmed this. and on blood tests in general, a serum c reactive protein test and erythrocyte sedimentation level test indicated high levels of inflammation which points towards Crohn's. that sounds like it would take a while but because I was a child (7) it was all done so fast because they are concerned about development.
I hope you get all the treatment you need and a long awaited diagnosis!
xxxx
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04-17-2011, 01:11 PM   #12
social me
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You seem very strong for all that you have been through. I am so sorry you have had this your whole life. None of this seems fair and its not. Life gets hard but please know you are not alone..because (SADLY!!!) there are many people on this site that feel much the way you do. SO the best we can do is be here for one another when times are tough and eat up the days you have when they are good. Bless you.
04-18-2011, 03:51 PM   #13
ifeelsick
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Thanks again for all the kind words! I cannot tell you how much it helps my state of mind to finally interact with people who understand. My pill cam follow-up isn't until May 11th. Which is understandable since he has to scrutinize 50,000 pictures. I'm going to be pretty nervous until then, and don't have too much faith anything will show up...but there is still a glimmer of hope in my mind that I will get some answers. It just gets kind of disheartening to go through all these tests, and nothing ever shows up. Even if nothing does show up, I'm still glad I was able to get a test as comprehensive as the pill cam done. They said they'd call me in earlier if they found anything serious. If not, I'll have to go in and get the results because "they are too technical to discuss over the phone". Hopefully they won't charge me for the follow-up visit like they did with my other endoscopic/diagnostic tests since I actually had to pay out-of-pocket for this one.

At this point he's very hesitant to put me on the pred. because of the side effects. Thus far the only evidence he has, besides my symptoms, are high inflammation markers in my blood tests. But I guess they're not high enough for him to want to put me on steroids just yet. He wants to wait until there is more evidence of active inflammation. Right now I'm in limbo, and just gotta keep on keepin' on.

Oh, by the way, my name is Dustin.
04-18-2011, 06:32 PM   #14
StarGirrrrl
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Saw your post in the Undiagnosed Club, and if you read my posts i'm in a similar situation, inflammatory markers in blood raised for almost 5 years, dx IBS 2007, inflammation found on a white cell scan 2010 (accepted for one year as positive and then revoked after other tests normal). Normal Flexi sig in 2007, normal colonoscopy 2010 and normal small bowel follow through 2011.

Pill Cam booked and then they decided I couldn't have it. So Rheumy trying to get me a different scan and Gastro are dismissing it as IBS (I too have joint pain in left shoulder, normal MRI x2, and have to get up in the night). So fingers crossed for new scan, if not then I am outta that Hospital for a second opinion!

I am 24 and also have no life, I am the only one out of my friends who still lives at home and is single. They all have their own places, jobs, lives, partners and some have kids. Any trips out are planned with care to do a bathroom nearby route and I carry numerous items in case of an accident.

Will be waiting to hear your Pill Cam results. If you are diagnosed with CD/UC then I would consider a lawsuit after all you have been through, would give you something to focus on in the meantime even if you decided not to go ahead.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!

Last edited by StarGirrrrl; 04-18-2011 at 06:35 PM.
04-19-2011, 04:14 AM   #15
vickyhunter
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It must be so frustrating for you two to have not been diagnosed, but I've heard a few doctors say they won't diagnose people unless they have proof from colonoscopys/endoscopys etc that confirm Crohn's. It's a bit of a red tape situation
Keep trying though xxxxxxxxxxxxx
04-19-2011, 05:19 AM   #16
allieinwonder
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First of all, welcome to the forum!

I am so sorry you have been dealing with this for so long. I am also undiagnosed, with doctors telling me it is sever IBS (first dx in 2007, again a few months ago). I have had problems like this since I was 15 (21, almost 22 now), and I completely understand how frustrating this journey can be. I also have insane amounts of D, about 8 - 12 times a day. I am in pain in a certain spot in my abdomen, and lately it has been warm to the touch and swollen. My current GI told me a little over a week ago that I needed to go to the ER because of my symptoms, but then later in the conversation he told me there was nothing he could do for my IBS... absolutely crazy!

I saw my GP yesterday, and this is what he explained to me: if your crohn's is shallow ulcers that heal quickly, it can be very hard to diagnose. You have to find a doctor that is willing to to keep trying, and realize that this disease doesn't fit a list like other diseases. We all have different symptoms, foods we can't eat, and places where we are in pain.

I REALLY hope that pill cam gives you the answers you need. I myself am waiting for a pill cam test. I really hope it shows the doctors what they couldn't see before!!

Remember, you aren't alone here..we all know what you are going through and we all understand! Feel free to PM me anytime if you need to rant to someone!
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